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dazlin (@dazlin)

Always run down with MGUS

Blood Cancers & Disorders | Last Active: Feb 15, 2020 | Replies (12)

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@susangs

Hi Dazln,
My MGUS was discovered in 2012. To date my M protein has remained low, but my light chain ratio and kappa free quant chains have slowly increased. I am slightly below the threshold for needing a bone marrow biopsy. My problems with fatigue, general malaise, frequent sore throats, chills, etc. began about the same time and have gotten much worse over the years. I 've had to reduce my hours at work to half time and I only go out when I have to. Very frustrating! My physician has not associated my symptoms with the MGUS. She diagnosed me with Myalgic Encephalopathy instead. But, after reading your question and the responses, I may bring it up to her.
Susan

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Replies to "Hi Dazln, My MGUS was discovered in 2012. To date my M protein has remained low,..."

@susangs, I had to look that one up…think its classified as a chronic fatigue, but pretty severe. Alot of possible causes…viral, immune disorders, and more. Seems some drs dismiss alot of our symptoms being related to MGUS. In my case, as I shared ,my fighter cells are very low, leaving me very susceptible to infection…that the drs did say is from the abnormal cells crowding it out. IMO, maybe that's why I get so tired, feeling run down…I really don't know. I would think your dr ruled that out for you, since she said you have this chronic fatigue…but doesn't hurt to ask if all your healthy white cells are within normal range. Not anemic either, right? It is verrrrry frustrating, and more so when we suddenly experience symptoms that baffles drs. I also get SEVERE RASHES,( maddening)started 6 years ago, and night sweats which are getting worse. Last skin biopsies state similar to Grovers disease. They dont know what triggers it, but I have to be careful about sweating, and topicals, etc.
As for night sweats, last oncologist I saw, said, as long as I'm not soaking through the sheets, hes not too concerned.
What can I say…my guess is, if the numbers on bloodwork aren't out of range, the drs dont connect the dots. Maybe if enough patients share similar symptoms, they'll start recording it. Sometimes I feel like I don't know why I bother to go anymore. If things get bad enough to show on bloodwork, then that's when I may get help…IDK..Shrugg.